The London Olympic Games gave the world an opportunity to behold something previously unseen: an amputee athlete, Oscar Pistorius, crouching in the starting blocks alongside the world’s greatest runners. Such a sight raised an unprecedented question: are new generation prostheses going to give an unfair advantage to certain athletes? Technologies are now allowing amazing performances. But is technological progress advancing social integration for the disabled?
Surprisingly enough, over the past two decades, disability rates have been on the rise. This is due to many factors, such as wars and, in developed countries, an aging population and an increasing number of people with chronic conditions. According to the World Health Organization (WHO), over one billion people are living with some form of disability. This amounts to approximately 15% of the world population. Other international agencies suggest an estimated 500 to 600 million people.
Such figures show the extent of the tremendous value of technical aids. However, one may wonder if the development of compensation techniques can actually help to change the place of disabled people in our societies – for the issue of physical abilities is inseparable from that of integration, which has taken a central place in the definition of disability.
Inclusion is the central question
The word handicap is a portmanteau of “hand in cap”, a term coming from equestrian sports. Originally, it referred to the practice of giving a disadvantage to the best competitors (e.g. adding extra weight on the best horses) to even out their chances with less gifted competitors at “handicap races”. The appearance of the word “disability” was a significant break in the way people with disabilities were treated. After centuries emphasizing otherness and disability and excluding individuals from the social norm, the word hints at a new stance from the community regarding such a disadvantage: a moral need to fill in, so as to include everyone in social competition. Thus, far from the previous notion of a “cripple”, the “handicapped” was from the outset inscribed in a strong commitment towards inclusion of members considered the weakest.
While the stereotype of the wheelchair remains, in a country like France it represents only 2% of the disabled population. Actually the scope of disability is much broader: the WHO defines it as “the result of the interaction between the lasting or permanent impairment of one or more motor, sensory or mental functions, and obstacles encountered in the physical and social environment.” In most developed countries, recent legislation has been shaped by this vision, with an emphasis on equal rights and opportunities and participation in community life: access to employment, transportation, public spaces, but also to elective office. The compassionate approach that prevailed until the 1980s and that locked up disabled persons in dependency is now giving way to an affirmation of their full citizenship.
This new perspective was the result of a long historical process. Until the eighteenth century, “a cripple” unwillingly posed the following question to society: “Is he a symptom? Of what?” and, in the name of charity, that person was helped in order to survive, but survived on the margins of the community. In industrialized countries this exclusionary approach saw a radical shift in the late nineteenth through the accidents caused by industrialization, and in the early twentieth century, with the “broken faces” of WW1 – war veterans with facial injuries. After breaking the bodies, society, symbolically indebted, had to repair them. Thus, from the mere pecuniary assistance that had been in force for centuries came the gradual path towards social rehabilitation. In France, for example, a series of milestones came one after another: compensations for occupational accidents (1898), labor quotas (1916), rehabilitation (1918), mandatory employment (1924), and from the 60’s on, preservation of housing for the mentally disabled and accessibility standards for the motor impaired. In the United States, mental illnesses were redefined with the inclusion of PTSD – i.e., post-traumatic stress disorder – in the Diagnostical and Statistical Manual of Mental Disorders, which was to provide both a legal and a medical framework to veterans of Korea and Vietnam, with a dual purpose: to compensate and rehabilitate.
Historian Henri-Jacques Stiker summarizes this shift as follows: “Without banishing “defective” words (lame, impotent, invalid, imbecile, etc.), “recovery” words appeared (reconversion, readaptation, rehabilitation, reintegration, etc.).” Based on this previously unseen language, new institutional bodies were created to give economic independence to people with disabilities. In addition, human rights declarations and conventions inscribed the rights to juridical and economic equality, dignity, education, teaching and learning, etc. In 1975, the United Nations stated that “Disabled persons have the inherent right to respect for their human dignity”. Today, public awareness of disability is a reality, and in developed countries, governments, through laws and recommendations, are still trying to find suitable ways to facilitate inclusion.
All in all, one can nowadays broadly define the management of disability as a package (at once legislative, educational, and technical) aiming to compensate it. It is in this context that the contribution of technological innovations should be assessed, and they raise great expectations. Where can we find the most promising innovations?
Prostheses and software: making senses
Many agree on this point, the greatest progress so far relates to the two major sensory disabilities: deafness and blindness.
Regarding deafness, the latest prostheses allow to limit noise pollution coming from background sounds, and thus make conversation easier. Profound deafness can benefit from cochlear implants, however the Thoumié report (2004, PDF in French) underlines their limits: “These very expensive devices are often not worn due to the lack of support, namely an aural rehabilitation aimed at developing brain plasticity”.
As for blindness, technology provides extremely rich aides, even though the most interesting areas are still at the experimental stage. Part of the research is now focusing on the development and implementation of a new generation of retinal prostheses. To help the blind whose optic nerve is still intact, these chips turn images captured by a camera set outside the body into electrical signals that the brain is able to interpret. Thirty volunteers are currently testing this type of implant around the world, e. g. in the Paris-based Vision Institute.
Along these radical solutions, technological innovation is focusing on synthetic speech and optical character recognition or OCR. In a report published in 2010, consultants from Nova 7 note that since the first applications were developed in Boston, several generations of reading machines have emerged: “The Data Copy company, which has been a leader in scanners and OCR, and Westinghouse’s Speech Plus division for synthetic speech both derive from the contribution of the engineering team at Telesensory labs, dedicated to research for the visually impaired.”
Lastly, technological advances related to blindness also cover access to written information, regardless of medium. Two centuries after its inception, Braille fits technology more than ever. Digitalized and supplemented by speech, it now allows the blind to access Internet through software like “Jaws”, which allows the user of a Braille display to access the contents of the computer through a touch screen.
Movement and spatiality: robotics and ICT
Motor disability has also prompted some notable advances in the field of robotics.
A formidable technological challenge developed by Cyberdyne, a Korean company, the HAL exoskeleton Robot Suit aims to restore walking through rigid leggings. Destined to mobility impaired people, it also addresses medical personnel that must handle them. This highly futuristic set has already sold 2000 copies in Japan – for a price ranging from 2000 to 17000 euros apiece. In a more traditional field, the wheelchair has also dramatically improved. Designed as heavy-duty mobile stations, chairs are bound to take on more and more tasks to facilitate their owner’s autonomy. Some chairs are about to become true all-terrain vehicles, able to adapt to the challenges of the city, climb stairs or stand up on two wheels, all based on Segway technology.
The disabled person’s peripersonal space – in other words, that person’s accessibility – also benefits from the advances in information technologies. Note for example the joint initiative of the City of Paris and the Vision Institute, which consists, under the name “Panammes 2009-2014”, of developing an experimentation urban area around the Parisian Hospital Quinze-Vingt to improve accessibility and mobility for the visually and hearing impaired. Opposite the development of urban facility planning are in-home support technologies, especially suitable in case of diabetes, hypertension or congestive heart failure. They pursue a dual objective: to prevent or reduce the need for care within specialized institutions, thereby alleviating both the financial burden and the emotional and moral burden the latter entail for the patient and his family.
This brief overview of technological advances gives cause for hope that most cases of profound deafness will indeed disappear and that for a great number of blind people, in the short or medium run, total blindness will actually have been vanquished. Mobility, too, is sharply improving, with innovations that still belonged to science fiction a mere twenty years ago. But we must keep in mind that many of them are still in experimental stage and are at the very least extremely expensive. Furthermore it is clear that technology alone is unable to make up for everything.
Reducing potential sources of disability remains very effective. Such is the purpose, for example, of prevention campaigns against rubella, which is responsible for malformations of the fetus; of road safety, and more generally speaking, of a struggle against extreme poverty and squalor, which are responsible for serious deficiencies (nutrient deficiencies, mental retardation…). Moreover, as advanced as it may be, technology can do nothing against the social environment, which causes considerable variations in the way a disability is experienced (family conditions, habitat quality, socio-economic level, legislation and mentality in the country…). Besides, the diffusion of new technologies is indeed constrained by their prohibitive costs, for lack of a market large enough to recoup them. The Thoumié report expressed its fear that “inequality of access to technologies could further aggravate handicap situations vis-à-vis the able-bodied”. Thus, these promising advances must go hand in hand with the implementation of conditions enabling access for all.
Moreover, beyond the issue of price, ownership of technical aids often requires support to become accustomed to it. One could add that new assistive technologies do not necessarily involve futuristic and revolutionary apparatus. When TV channels such Gulli, Canal J and Tiji produce shows to learn the French Sign Language (LSF) and dedicated programs, or an internet site like “tvpourtous” (a French “tvforall”) offers 600 minutes of online educational videos available for the Deaf and Hard of Hearing, it is highly likely that any and all targeted individuals will see it as a familiar, concrete and benevolent improvement of their daily life.
Finally, well upstream of its eventual diffusion, research for assistive technology suffers from being drastically undervalued. There is lack of both resources and organizational structure, and the industrial line still has to cope with a low profile. The origins of these deficiencies are to be found in a few recurring factors: the very small room given to disability courses in health and medical sciences curricula, a willingness all too discreet, inside research organizations, to make disability a research priority, and lastly a lack of agreement on the scope of research and how it falls into the different disciplines (humanities and social sciences, educational sciences, biomedical research, rehabilitation technologies, automated equipment, robotics).
One thing is certain however: technological progress, both in its promising and relative aspects, echoes the tension that people with disabilities are experiencing today. According to disability sociologist Myriam Winance, “disabled persons are torn between accepting their differences (which comes down to accepting that they are not “normal”) or accepting themselves as normal persons (which means they conceal or cover and therefore deny their difference). Basically, a disabled person is torn between two statements: I am like everyone else or I’m different.” Indeed, technology tends to embrace this desire to “be like everyone else.” Our initial example with Oscar Pistorius literally embodies that perspective. But these technologies probably have to come to terms with differentiation. However, argues Ludovic Vievard, a “We are all the same” attitude is a refusal to reflect on diversity and give it a place – hence the disabled’s claim for a “right to be different”.
It is then altogether difficult to argue that technology is a strong integration factor for people with disabilities. But that perspective can be reversed, leading to consider the potential that disability issues offer to technological innovation.
Disability as a source of innovation?
Geoffrey Bing, a social marketing consultant at Nova 7, confirms it: “Because it has a singular way of raising specific questions covering use, accessibility and acceptability, disability carries with it the seeds of innovation that can benefit to society as a whole”. In his study for the Greater Lyons urban conglomeration (in French), he also quickly addresses disability in market terms: “We see the arrival of major industrial players coming from electronics and ICT into the autonomy and disability market. Prospects for the deployment of information technology, and for home automation and robotics as well, suggest that the market will be profitable enough to accommodate tomorrow’s new economic actors.” If the new technologies are to contribute to make disability an industry, the risk of exploitation must then be duly noted.
Bing elaborates: “Disability refers to a noble cause that allows to remove certain ethical reservations, paving the way for some research work that has little to do with the cause they initially defended.” The questions this raises come on at least two levels. The first concerns the general question of performance of the human body and improving it: approaching it from the perspective of handicaps can lead to work on genetics, or on programs to improve physical performance – therefore raising serious ethical questions.
On a second level, the cause of fighting disability can be used as a Trojan horse for corporate interests whose strategy is to capture public policies. A possible and notable example could be the issue of access to public places, which, if diverted, would pave the way for controlling and monitoring people’s movements – raising serious concerns regarding confidentiality and private data capture. Also, and more simply, one could question the never-ending equipment race and the relevance of certain standards. The question is particularly relevant in a context marked by the power of lobbying, which can lead unscrupulous economic players to endorse a cause whose legitimacy is unquestionable, only to push their business interests.
It is with this concern in mind that Jean-Marie André, in the Thoumié report, notes that “it is essential for technological research on disability to be clearly identified and promoted by official agencies, for disability to be understood in its exact meaning, and for the term disability not to constitute a fake humanitarian alibi that provides a good excuse, which has all too often been the case in recent years.”
- Robot Suit HAL
- JAWS (Freedom Scientific)
- The Telesensory Lab
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- The Revolution of Personalized MedicineBy Marc-Olivier Bévierre on November 8th, 2011
- Spurring the Market for High-Tech Home Health CareBy McKinsey Quarterly on October 12th, 2011
- The Three Faces of the City 2.0By ParisTech Review on May 9th, 2012
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